October 27, 2010
by marfmom
16 Comments

It’s Not a Game

Before I added the titles of “wife” and “mommy” to my resume, I had the position of “research assistant.” For two years in college I worked alongside one of the top juvenile bipolar disorder researchers in the country. Our project was to study a variety of scales used to help diagnose a host of mental illnesses found in children to see how accurate the scales were. My particular project was comparing scales intended to diagnose juvenile bipolar disorder and conduct disorders.

In any case, over the course of my research I learned a few things about scales. While they can be great diagnostic aids, they’re still pretty subjective. Questions that can make perfect sense to a researcher or clinician may be confusing to the person taking the quiz. Scales don’t always take into account the purpose behind the behavior, which can have a big bearing on diagnosis. They are only one piece of a diagnosis, not the be all, end all. In short: scales are a tool best left to the professionals.

Why am I blogging about this today? I want to call attention to a new Facebook app: The Autism Spectrum Quotient Test. It takes a legitimate diagnostic tool and turns it into a cute little app for users to see how close to being autistic they might be.

First of all, this is totally unethical. I did a little research to find the original author of the scale and learned that the publication on Facebook is in CLEAR violation of the terms of use of the scale (obviously). It’s also irresponsible, as even with the little disclaimer that I’m sure they provide (I haven’t downloaded the app as I didn’t want to support it, but I did find the scale printed on another site, also against the terms of use), as users might really try to diagnose themselves using it.

But beyond all of that, this little Facebook quiz makes out autism to be some kind of game, like those “what does your favorite flavor of ice cream say about you” or “are you really like your zodiac sign” quizzes. Guess what though? Autism isn’t a game! People with autism aren’t something to compare yourselves to. It’s not funny to joke about “autistic behaviors” that you might possess.

My husband and, it is becoming more and more clear, our son, are on the autism spectrum. You know what autism means to us right now? Therapy 4 times a week. Constantly discussing how we might better be able to work with M. at home. Last night I think Mark and I had 10 minutes to talk before bed and we spent most of that time dissecting the Menininho’s latest vocal patterns to try to determine which are hollow mimicking and which are the beginning of speech. This morning I had to set M. in his crib to keep him from bruising and cutting his face (again) because he was beating his head against the table, floor, and wall.

Yep, autism is a really cute game.

So please: think before you play these type of Facebook apps. Consider the people behind them, whether they are people with autism, bipolar, schizophrenia, or perhaps people of a culture or religion different from you. Think how THEY might feel about being portrayed as a source of amusement.

October 26, 2010
by marfmom
14 Comments

My Birth & Postpartum Plans

After last week’s miserable OB appointment, I had a lot more research to do. I want the healthiest birth possible for myself and Smudge. As of today, that’s a VBAC. That could change in the next few weeks (for instance, if he flips breaeh or if my aorta grows), but for now, I am set on a VBAC. I know that unnecessary interventions can create a cycle that will make a c-section much more likely, but I also don’t want to come into the hospital and immediately set up a barrier with the medical staff by fighting everything.

After talking with Mark and with our doula, I’ve come up with this birth plan (obviously subject to change with a change in circumstances, whether that be before or during the birth).

1) Due to the distance I live from the hospital in traffic, if I go into labor during the day I will head to the hospital sooner rather than later…probably when my contractions are coming about 5 minutes apart. If I go into labor at night, I’ll likely labor at home a little longer.
2) I’m not going to check into L&D right away. I’m going to walk around the hospital grounds, maybe grab a light bite to eat, and monitor my blood pressure with my personal monitor. When my BP starts to go high, or I get too uncomfortable, I’ll go upstairs and check in. With any luck, I won’t end up there till it’s about time for the epidural, this eliminating any discussion over early-labor monitoring.
3) I want periodic external monitoring, so that I can move around at least a little bit. My hospital does not offer wireless monitoring. I plan to very politely tell my nurse that I want to wait on continuous monitoring until I get my epidural and am bed bound.
4) I will not consent to internal monitoring without a cause. Having a VBAC is not cause enough. Internal monitoring means that my water will be broken and a screw inserted in my son’s scalp. It clearly brings a risk of infection, one that I’m not willing to take.
5) I’ll have the epidural between 3 and 5 cm, depending on how I’m feeling and how my blood pressure is. I need to have the epidural prior to full on active labor, which is why 5 cm is the upper limit. Only an attending or a fellow will be allowed to insert the epidural. Normally I’m cool with students practicing on me, but not with dural ectasia, not while I’m in labor and so much rests on this epidural working.
6) If I “stall out” I want to try having my water broken or use nipple stimulation before moving to pitocin.
7) Internal exams will be kept at a minimum after my epidural is inserted. I’ll decide how often. Internal exams increase the risk of infection and increase the risk of me being told I’m not progressing. I’d rather rely on how the baby and I are feeling to determine how well labor is progressing, because internal exams tell you VERY little.
8 ) As a rule, Mark knows to tell the medical professionals that we’re going to take a minute to discuss anything they want to do before consenting. I just want to be able to have that time to make a decision with a clear head so I don’t regret feeling pressured later. Whether I end up going with what they suggest or not, I’ll feel better being confident that it was my decision.
9) Apparently I’ll be allowed to push a little bit (?). This is not typically recommended but I have a really nice aorta so I might go along with it. I’m going to discuss it with my cardiologist at my next echo. Otherwise, forceps or vacuum will be used, whichever the doctor on call is most versed in.

If I need a c-section:
1) I want Mark & our doula in the room with me.
2) I want one of the doctors describing to me what they are doing, rather than just talking amongst themselves.
3) I’d like to be able to have my arms unbound so I may touch the baby before he’s cleaned.
4) Mark will go with the baby and our doula will stay with me. I want to be able to breastfeed in the recovery room.

Postpartum Plan:
1) Assuming baby & I are both ok, I want to hold him immediately, before he is cleaned.
2) I want to take an hour to allow him to nurse and us to bond before his bath and routine testing/weighing.
3) I’d like those tests done in our room and if they can’t be, then Mark will go with the baby.
4) No artificial nipples, sugar water, or formula
5) Smudge will room in with us (as opposed to staying in the nursery).

October 25, 2010
by marfmom
11 Comments

My Resolve

Last week I had my 33 week checkup (can’t believe I’m less than a month till full term!), which did not. go. well. I brought with me a copy of birth questions/wishes. While Marfan forces me into some things, I know my limits, I know the research, and I am not going to let Marfan rule my birthing experience more than it needs to. My birth wishes only had two major requests: being allowed to walk around a bit before getting my epidural and having procedures explained to me before they’re done. Anything besides that was gravy.

However, I really wasn’t counting on my OB’s attitude. I have never seen him so instantly defensive and aggressive. The information he was giving me was not accurate, and I know that because I’ve read the American College of Gynecology’s (ACOG) VBAC guidelines. My doctor insisted I’ll have to labor laying in bed the entire time, hooked up to both external and internal monitors. I was told there is NO other way to tell if I’ve had a uterine rupture than by checking the baby’s heart rate on those monitors (not true). My doctor pulled out dead baby scare tactics. When I tried to get information on how doctors determine whether decelerations in a baby’s heart rate are problematic (seeing as they normally occur with contractions), he told me it was too complicated to explain to me.

“There are years of schooling that go into that,” he said. “It would be like me trying to explain how an EKG works to you.” Well that’s pretty funny, because I can follow along with my echocardiograms and I DO know how an EKG works. But even if I didn’t, this is MY body and MY baby and I have a right to have ALL my questions answered.

From there, I was told the hospital expects me to dilate 1.5 cm an hour after I hit 4 cm, even though this is my body’s first time laboring. Research from the last 10 years shows this is an outdated idea (it’s from the 1950s) and dilation can be much longer than that.

Our entire “discussion,” my doctor kept saying “Well YOU’RE the one who wants to VBAC. If it’s really that important to you, then you have to let the experts do what we think is best.” Never mind the experts are not even using the research from their own professional organization. Listen…I did the whole trusting blindly thing once. I had some permanent damage from that surgery. Oh, and then I did it again and ended up with an unnecessary c-section.

I decided to give my body over to my baby for 9 months. I did NOT decide to give my body over to a doctor. I deserve informed consent for each procedure, and that means to know the benefits AND risks, and then be allowed to make my OWN decision.

I also resent that every doctor I’ve spoken with this pregnancy seems to be more concerned with my uterus rupturing than my aorta dissecting. You know what the facts are? The risk of a complete uterine rupture for someone with one c-section and a low transverse scar (like me) is 0.2% – 1.5%, with many studies showing it’s less than 1%. The risk for a dissection in the descending aorta in a woman with Marfan and WITHOUT a dilated aorta is 2%: about TWICE that of a uterine rupture.

As for the rest, even ACOG says that there is no proof continuous fetal monitoring is better at detecting rupture than intermittent monitoring, and we know that moving around in early labor can help prevent a woman from stalling out.

While I was initially discouraged (ok, hopeless) after my appointment, I’m not giving up on the birth that I want. Because I’ve taken the time to get informed, I know it’s still possible. Tomorrow I am going to post my birth and postpartum plan.

Oh, and one of my friends on Twitter sent me this article about the 3 different types of decelerations that you can see on a fetal monitor and which are problematic and when. And guess what? It only took one quick read-through for me to understand it!